The Beginning (Part 2)
Is this normal?
She had latched onto my breast immediately in the hospital. But as the days went by, she became less interested in feedings. Our immediate thought was that she was possibly having issues with the formula. This is my first child, and everything was so new and foreign to me. The pediatricians switched her to a formula that would be easier on her stomach. As I looked at her in the crib, I began to notice her little chest move up and down in a bit of a jerking motion. Was her tummy hurting so much it made her flinch?
We made another appointment
We made another appointment to see the doctor. This time he said that her heart rates were abnormal, and he wanted us to go directly to Yale New Haven Hospital’s emergency room. I do remember that car ride was the start of “That Feeling” that feeling I get every time I step into a hospital or need to have tests or procedures done with Alyssa. There is really no way to explain it accurately because there are no words that are quite fitting. The best I can say is involuntary jitters, panic, horror, nausea, and fear all jumbled into a ball and stuffed into your chest.
Tell me you can fix this!
As they grabbed my baby girl from my arms and began hooking her up to machines I never knew existed, we knew immediately that this was not a food allergy - it was way bigger than anything we could have feared. We sat in a tiny room of doctors who were doing an echocardiogram on Alyssa. The room became overstuffed with one doctor after the other who came to consult with the attending doctor. I would look at their faces to see if I could gauge their reaction to what they were seeing. To my horror, I was met with sympathetic smiles and comments about how Alyssa was in the right place. No, I wanted to scream: 'Stop saying that, tell me she going to be ok! Tell me you can fix this!'
Life-threatening heart condition
The doctor who came to tell us the “news” was one of the best doctors in the area specializing in heart failure. He came to be very close to Alyssa and our family, but at the time was just a stranger. He explained her condition - cardiomyopathy - and the road we had ahead of us. We could not believe what we were hearing. Our perfect little baby girl was being diagnosed with a life-threatening heart condition.
I had no choice
Basically, at that point, our goal was to make it through the night. She did make it through that night and the next and she continues to be my beautiful baby girl. She is 25 now and I won’t say the ride was easy. Far from it, but I consider her and her sister Nicole my biggest blessings no matter how hard we had to work to keep them healthy. She received a heart transplant at age eight and is currently living her best life. This was my crash course and introduction to my most important rolls mother and “caregiver”. I never wanted the job of the caregiver but I had no choice. I gave up a lot of myself and my dreams of that white picket fence and the perfect family and found out that I now had new dreams and goals for the future and settled in for the ride.
What can someone do to better support you? (Choose all that apply)